Health-related quality of life for children with ASD: Associations with behavioral characteristics / Karen A. KUHLTHAU in Research in Autism Spectrum Disorders, 7-9 (September 2013)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 7-9 (September 2013) . - p.1035-1042 Titre : Health-related quality of life for children with ASD: Associations with behavioral characteristics Type de document : Texte imprimé et/ou numérique Auteurs : Karen A. KUHLTHAU, Auteur ; Erica A. KOVACS, Auteur ; Trevor A. HALL, Auteur ; Traci CLEMMONS, Auteur ; Felice ORLICH, Auteur ; Jennifer DELAHAYE, Auteur ; Darryn SIKORA, Auteur Article en page(s) : p.1035-1042 Langues : Anglais (eng) Mots-clés : Health-related quality of life  Behavior Index. décimale : PER Périodiques Résumé : Abstract This paper examines health-related quality of life (HRQoL) of children age 6–11 years with an autism spectrum disorder (ASD) using the Child Health and Illness Profile – Child Edition (CHIP–CE). We further examine associations of HRQoL scores with measures of behavior using regression models. Overall HRQoL scores are lower than those for normative samples. We find that both externalizing and internalizing behaviors (measured with the Child Behavior Checklist) are correlated with HRQoL as are several of the subscales of the aberrant behavior checklist. These results suggest that some potentially modifiable aspects of ASD, in particular ASD-related and aberrant behaviors, are associated with HRQoL. These associations are suggestive of the potential for improvements in behaviors in some domains having the potential to improve HRQoL. Future studies should determine whether improvements in behaviors are associated with improvements in HRQoL. En ligne : http://dx.doi.org/10.1016/j.rasd.2013.04.006 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=210 [article] Health-related quality of life for children with ASD: Associations with behavioral characteristics [Texte imprimé et/ou numérique] / Karen A. KUHLTHAU, Auteur ; Erica A. KOVACS, Auteur ; Trevor A. HALL, Auteur ; Traci CLEMMONS, Auteur ; Felice ORLICH, Auteur ; Jennifer DELAHAYE, Auteur ; Darryn SIKORA, Auteur . - p.1035-1042. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 7-9 (September 2013) . - p.1035-1042 Mots-clés : Health-related quality of life  Behavior Index. décimale : PER Périodiques Résumé : Abstract This paper examines health-related quality of life (HRQoL) of children age 6–11 years with an autism spectrum disorder (ASD) using the Child Health and Illness Profile – Child Edition (CHIP–CE). We further examine associations of HRQoL scores with measures of behavior using regression models. Overall HRQoL scores are lower than those for normative samples. We find that both externalizing and internalizing behaviors (measured with the Child Behavior Checklist) are correlated with HRQoL as are several of the subscales of the aberrant behavior checklist. These results suggest that some potentially modifiable aspects of ASD, in particular ASD-related and aberrant behaviors, are associated with HRQoL. These associations are suggestive of the potential for improvements in behaviors in some domains having the potential to improve HRQoL. Future studies should determine whether improvements in behaviors are associated with improvements in HRQoL. En ligne : http://dx.doi.org/10.1016/j.rasd.2013.04.006 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=210

Health-Related Quality of Life in Children with Autism Spectrum Disorders: Results from the Autism Treatment Network / Karen A. KUHLTHAU in Journal of Autism and Developmental Disorders, 40-6 (June 2010)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 40-6 (June 2010) . - p.721-729 Titre : Health-Related Quality of Life in Children with Autism Spectrum Disorders: Results from the Autism Treatment Network Type de document : Texte imprimé et/ou numérique Auteurs : Karen A. KUHLTHAU, Auteur ; Trevor A. HALL, Auteur ; Darryn M. SIKORA, Auteur ; Erica A. KOVACS, Auteur ; Felice ORLICH, Auteur ; Jennifer DELAHAYE, Auteur ; Traci E. CLEMONS, Auteur Année de publication : 2010 Article en page(s) : p.721-729 Langues : Anglais (eng) Mots-clés : Autism Quality-of-life Behavior Adaptive-behavior Index. décimale : PER Périodiques Résumé : We examined data collected as a part of the Autism Treatment Network, a group of 15 autism centers across the United States and Canada. Mean Health-Related Quality of Life (HRQoL) scores of the 286 children assessed were significantly lower than those of healthy populations (according to published norms). When compared to normative data from children with chronic conditions, children with ASD demonstrated worse HRQoL for total, psychosocial, emotional and social functioning, but did not demonstrate differing scores for physical and school functioning. HRQoL was not consistently related to ASD diagnosis or intellectual ability. However, it was consistently related to internalizing and externalizing problems as well as repetitive behaviors, social responsiveness, and adaptive behaviors. Associations among HRQoL and behavioral characteristics suggest that treatments aimed at improvements in these behaviors may improve HRQoL. En ligne : http://dx.doi.org/10.1007/s10803-009-0921-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=102 [article] Health-Related Quality of Life in Children with Autism Spectrum Disorders: Results from the Autism Treatment Network [Texte imprimé et/ou numérique] / Karen A. KUHLTHAU, Auteur ; Trevor A. HALL, Auteur ; Darryn M. SIKORA, Auteur ; Erica A. KOVACS, Auteur ; Felice ORLICH, Auteur ; Jennifer DELAHAYE, Auteur ; Traci E. CLEMONS, Auteur . - 2010 . - p.721-729. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 40-6 (June 2010) . - p.721-729 Mots-clés : Autism Quality-of-life Behavior Adaptive-behavior Index. décimale : PER Périodiques Résumé : We examined data collected as a part of the Autism Treatment Network, a group of 15 autism centers across the United States and Canada. Mean Health-Related Quality of Life (HRQoL) scores of the 286 children assessed were significantly lower than those of healthy populations (according to published norms). When compared to normative data from children with chronic conditions, children with ASD demonstrated worse HRQoL for total, psychosocial, emotional and social functioning, but did not demonstrate differing scores for physical and school functioning. HRQoL was not consistently related to ASD diagnosis or intellectual ability. However, it was consistently related to internalizing and externalizing problems as well as repetitive behaviors, social responsiveness, and adaptive behaviors. Associations among HRQoL and behavioral characteristics suggest that treatments aimed at improvements in these behaviors may improve HRQoL. En ligne : http://dx.doi.org/10.1007/s10803-009-0921-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=102

Pediatric provider’s perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions / Karen A. KUHLTHAU in Autism, 19-3 (April 2015)  

Public ISBD [article]  inAutism > 19-3 (April 2015) . - p.262-271 Titre : Pediatric provider’s perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions Type de document : Texte imprimé et/ou numérique Auteurs : Karen A. KUHLTHAU, Auteur ; Marji E. WARFIELD, Auteur ; Jill HURSON, Auteur ; Jennifer DELAHAYE, Auteur ; Morgan K. CROSSMAN, Auteur Article en page(s) : p.262-271 Langues : Anglais (eng) Mots-clés : autism  transition  youth  healthcare  pediatrics Index. décimale : PER Périodiques Résumé : Few youth with autism spectrum disorder (ASD) nationally report receiving services to help them transition from the pediatric health care system to the adult health care system. For example, only one-fifth (21.1%) of youth with ASD receive any transition planning services. To better understand why the transition from pediatric to adult health care is so difficult, we interviewed pediatric health care providers with extensive experience serving youth with ASD. We gathered information about the strategies and interventions they use to transition their patients with ASD to an adult provider. Five interventions or strategies are currently being used. These include providing families with written medical summaries to give to adult providers, compiling lists of available adult providers or community resources, coordinating care and communication between individual pediatric and adult providers, making transition-specific appointments, and using checklists to track transition progress. Other interventions or strategies were identified as needed but not currently in practice, and these focused on education and training. For example, informational workshops were suggested to train families and youth about transition. Training adult providers and medical students was also seen as important. Several respondents additionally identified the need for a transition center where all services could be coordinated in one place. With large numbers of youth with ASD becoming young adults, it seems that pediatric practices might want to consider some of the activities described here. Some of these activities, such as family educational seminars and written medical summaries, are likely relatively easy for a practice to implement. En ligne : http://dx.doi.org/10.1177/1362361313518125 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=257 [article] Pediatric provider’s perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions [Texte imprimé et/ou numérique] / Karen A. KUHLTHAU, Auteur ; Marji E. WARFIELD, Auteur ; Jill HURSON, Auteur ; Jennifer DELAHAYE, Auteur ; Morgan K. CROSSMAN, Auteur . - p.262-271. Langues : Anglais (eng) in Autism > 19-3 (April 2015) . - p.262-271 Mots-clés : autism  transition  youth  healthcare  pediatrics Index. décimale : PER Périodiques Résumé : Few youth with autism spectrum disorder (ASD) nationally report receiving services to help them transition from the pediatric health care system to the adult health care system. For example, only one-fifth (21.1%) of youth with ASD receive any transition planning services. To better understand why the transition from pediatric to adult health care is so difficult, we interviewed pediatric health care providers with extensive experience serving youth with ASD. We gathered information about the strategies and interventions they use to transition their patients with ASD to an adult provider. Five interventions or strategies are currently being used. These include providing families with written medical summaries to give to adult providers, compiling lists of available adult providers or community resources, coordinating care and communication between individual pediatric and adult providers, making transition-specific appointments, and using checklists to track transition progress. Other interventions or strategies were identified as needed but not currently in practice, and these focused on education and training. For example, informational workshops were suggested to train families and youth about transition. Training adult providers and medical students was also seen as important. Several respondents additionally identified the need for a transition center where all services could be coordinated in one place. With large numbers of youth with ASD becoming young adults, it seems that pediatric practices might want to consider some of the activities described here. Some of these activities, such as family educational seminars and written medical summaries, are likely relatively easy for a practice to implement. En ligne : http://dx.doi.org/10.1177/1362361313518125 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=257

Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD) / Marji E. WARFIELD in Journal of Autism and Developmental Disorders, 45-7 (July 2015)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 45-7 (July 2015) . - p.2209-2217 Titre : Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD) Type de document : Texte imprimé et/ou numérique Auteurs : Marji E. WARFIELD, Auteur ; Morgan K. CROSSMAN, Auteur ; Jennifer DELAHAYE, Auteur ; Emma DER WEERD, Auteur ; Karen A. KUHLTHAU, Auteur Année de publication : 2015 Article en page(s) : p.2209-2217 Langues : Anglais (eng) Mots-clés : Adults with autism spectrum disorders  Health care  Physician perspectives  Physician training Index. décimale : PER Périodiques Résumé : We conducted in-depth case studies of 10 health care professionals who actively provide primary medical care to adults with autism spectrum disorders. The study sought to understand their experiences in providing this care, the training they had received, the training they lack and their suggestions for encouraging more physicians to provide this care. Qualitative data were gathered by phone using a structured interview guide and analyzed using the framework approach. Challenges to providing care were identified at the systems, practice and provider, and education and training levels. Solutions and interventions targeting needed changes at each level were also proposed. The findings have implications for health care reform, medical school and residency training programs, and the development of best practices. En ligne : http://dx.doi.org/10.1007/s10803-015-2386-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=261 [article] Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD) [Texte imprimé et/ou numérique] / Marji E. WARFIELD, Auteur ; Morgan K. CROSSMAN, Auteur ; Jennifer DELAHAYE, Auteur ; Emma DER WEERD, Auteur ; Karen A. KUHLTHAU, Auteur . - 2015 . - p.2209-2217. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 45-7 (July 2015) . - p.2209-2217 Mots-clés : Adults with autism spectrum disorders  Health care  Physician perspectives  Physician training Index. décimale : PER Périodiques Résumé : We conducted in-depth case studies of 10 health care professionals who actively provide primary medical care to adults with autism spectrum disorders. The study sought to understand their experiences in providing this care, the training they had received, the training they lack and their suggestions for encouraging more physicians to provide this care. Qualitative data were gathered by phone using a structured interview guide and analyzed using the framework approach. Challenges to providing care were identified at the systems, practice and provider, and education and training levels. Solutions and interventions targeting needed changes at each level were also proposed. The findings have implications for health care reform, medical school and residency training programs, and the development of best practices. En ligne : http://dx.doi.org/10.1007/s10803-015-2386-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=261

Quality of life for parents of children with autism spectrum disorders / Karen A. KUHLTHAU in Research in Autism Spectrum Disorders, 8-10 (October 2014)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 8-10 (October 2014) . - p.1339-1350 Titre : Quality of life for parents of children with autism spectrum disorders Type de document : Texte imprimé et/ou numérique Auteurs : Karen A. KUHLTHAU, Auteur ; Nalin PAYAKACHAT, Auteur ; Jennifer DELAHAYE, Auteur ; Jill HURSON, Auteur ; Jeffrey M. PYNE, Auteur ; Erica KOVACS, Auteur ; J. Mick TILFORD, Auteur Article en page(s) : p.1339-1350 Langues : Anglais (eng) Mots-clés : Health-related quality of life  Parent  Parent well-being  Depression Index. décimale : PER Périodiques Résumé : This project describes health-related quality of life (HRQoL) of parents of children with autism spectrum disorders (ASDs) using mixed methods. Parents of children with ASDs (N = 224) reported on their HRQoL, depression, and caregiving burden using quantitative tools. HRQoL scores were slightly worse than from those in normative populations especially related to stress and mental health. For example, parents reported average HRQoL scores from SF-6D of 0.74, which was clinically significant lower than an average normative U.S. population. 40% of parents reported having clinical depression symptoms. Married parents reported lower depression symptoms than parents who were not. In addition, families with three or more children with special health care needs (CSHCN) reported lower HRQL and higher caregiving burden than families with less CSHCN. In the qualitative study, we conducted five focus groups to gain insight as to the reasons a child's ASD might influence a parent's HRQoL. Qualitative data further supports the notion that parental HRQoL was negatively influenced by their child's ASDs. Studies that seek to quantify the influence of ASDs and to assess the effect of interventions for children with ASDs may consider measuring the effects on family members as well. En ligne : http://dx.doi.org/10.1016/j.rasd.2014.07.002 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=239 [article] Quality of life for parents of children with autism spectrum disorders [Texte imprimé et/ou numérique] / Karen A. KUHLTHAU, Auteur ; Nalin PAYAKACHAT, Auteur ; Jennifer DELAHAYE, Auteur ; Jill HURSON, Auteur ; Jeffrey M. PYNE, Auteur ; Erica KOVACS, Auteur ; J. Mick TILFORD, Auteur . - p.1339-1350. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 8-10 (October 2014) . - p.1339-1350 Mots-clés : Health-related quality of life  Parent  Parent well-being  Depression Index. décimale : PER Périodiques Résumé : This project describes health-related quality of life (HRQoL) of parents of children with autism spectrum disorders (ASDs) using mixed methods. Parents of children with ASDs (N = 224) reported on their HRQoL, depression, and caregiving burden using quantitative tools. HRQoL scores were slightly worse than from those in normative populations especially related to stress and mental health. For example, parents reported average HRQoL scores from SF-6D of 0.74, which was clinically significant lower than an average normative U.S. population. 40% of parents reported having clinical depression symptoms. Married parents reported lower depression symptoms than parents who were not. In addition, families with three or more children with special health care needs (CSHCN) reported lower HRQL and higher caregiving burden than families with less CSHCN. In the qualitative study, we conducted five focus groups to gain insight as to the reasons a child's ASD might influence a parent's HRQoL. Qualitative data further supports the notion that parental HRQoL was negatively influenced by their child's ASDs. Studies that seek to quantify the influence of ASDs and to assess the effect of interventions for children with ASDs may consider measuring the effects on family members as well. En ligne : http://dx.doi.org/10.1016/j.rasd.2014.07.002 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=239

The relationship between family functioning and behavior problems in children with autism spectrum disorders / Darryn M. SIKORA in Research in Autism Spectrum Disorders, 7-2 (February 2013)  

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The relationship between Health-Related Quality of Life and sleep problems in children with Autism Spectrum Disorders / Jennifer DELAHAYE in Research in Autism Spectrum Disorders, 8-3 (March 2014)  

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